Germany here we come

We get the green light to go to Germany.  I spend the previous afternoon packing everything we’ll need over the next 2 months, as well as boxes of tube feed, an insane amount of medication and it’s accompanying paraphernalia.  The doctors and nurses all come to wave us off and I feel weirdly sad and emotional to be leaving the ward.  We are leaving the safety net of our hospital room and transitioning onto the next treatment phase. 

Navigating the airport with a mountain of luggage, medical supplies and 2 children that can’t walk is no mean feat.  Emotions are strained and stress levels are high, I find myself bursting into tears going through security.  We finally make it to the gate where everyone has a chance to sit down and rest.  As we begin to board the plane I stand up whilst still holding Zac, unaware that I am stood on the wire connecting his NG tube to the feed machine.  The plaster rips off his face and the whole NG tube comes flying out of his nose.  Now we have no way of administering his feeds or medication, I feel utterly awful, but try to keep it together in front of Zac.  On the plane, a kind lady sitting a few rows down takes pity on us and sends us some bottled water and snacks which is greatly appreciated.

On landing, a taxi takes us to the house we will be staying at.  Seb’s parents have made the decision to travel to Germany too so they can support us; they arrive at the house shortly before we do and then promptly take Seb and Zac to the hospital, where Zac is admitted.  That night I sit in the kitchen with Sue and Keith, eating frozen pizza that tastes like the best meal in the world, and reflect upon what an utter whirlwind of a day that was.